In the last couple of decades I focused on healthy food and limiting my consumption of things that are bad for me (except beer and cheese, I mean, c’mon, I’m a Wisconsin girl). Then I added hiking to strive for better joints. I bought a farm to grow my own food, humanely and without chemicals. I smugly managed my health without prescription or OTC medicines. I thought I did all the right things.

Last gasp of the garden. Photo Meg Turville-Heitz

I didn’t count on a health care industry that apparently makes diagnostic decisions based on what insurance companies recommend. Protocol for abdominal pain? You’re eating too much, or too fast, or the wrong kinds of foods so eliminate this food group or that for a month. Still hurts? Here’s this medicine for indigestion. Didn’t work? Try that one. Oh, still hurts? Drink more water, eat more fiber. It can’t possibly be giant-ass tumors enveloping your ovaries that we would have looked for if we had just used this $100 blood test seven visits ago. Instead lets dick around for 8 months until it’s advanced to Stage 3 or 4, metastasized to parts of you we can’t remove, and it’s more likely to kill you. Somehow that works for them. I’m not a fan.

But I digress. This has also been an incredible learning journey. And boy do I love education, as I kept doing it until they kicked me out with a PhD and like 400 credits. Not that I really wanted to learn this stuff. I mean, learning to read lab work and spend a lot of time refreshing the online health chart while waiting for results, looking up medical terminology for various squicky things and reading after-visit notes (while screaming, I did NOT say that!), is probably good for all of us to pay more attention to.

Learned along the way, like it or not

I’ve learned things I didn’t expect, because, I don’t know, just basic ignorance, I guess, since in the US like 2 million people are diagnosed with a cancer each year.

First, the obvious. No two cancers are alike. None of them. Even if you have the exact same cancer with the exact same staging, the prognosis, response, experience and side effects are so variable even the oncologists sort of shrug (not the response you want to see). Attitude, comorbidities, diet, support systems, insurance coverage, health care providers, etc. all play a part.

For example, there can be a “paradoxical reaction” to drugs, where the opposite effect occurs. So, a sedative makes you hyper or an antidepressant makes you feel suicidal. Unfortunately, way too many drugs I’ve been given have paradoxically not worked for me (this would have been useful to know before I passed out while driving).

I’ve learned best intentions can be TMI. Your friend’s basal cell carcinoma may have been serious, but it’s not the same as excising an entire reproductive system in a 6-hour surgery. A stage 1 or 2 diagnosis is damned scary, but not on the scale of stage 3 or 4 am-I-going-to-die-soon scary. No, you don’t know exactly what I’m going through because you had to euthanize your beloved dog that had cancer. Seriously.

Surf at Piha Beach, west coast New Zealand. Photo: Meg Turville-Heitz

Relating how you knew someone who died from the same cancer isn’t helpful. I’d argue it’s cruel AF. Dismissing someone’s fears because you don’t want to think about the worst case scenario isn’t helpful either. They likely can’t stop the morbid feedback loop running through their head. I know I suck at finding the right thing to say. But “I’m sorry” is often enough. Distraction and humor helps. But it takes more than saying “be positive” to get there. There needs to be something positive to think about.

It’s easy to offer to help. Then there’s follow through. And sometimes that brand of help isn’t needed. My house is a mess because I’m sick (that’s my excuse and I’m sticking to it), but I’d be mortified if anyone else cleaned it. Offering food can be tricky: some foods are no-nos, or storage may be an issue. Sometimes small things are big. A friend sent a gas card the college-student son used while caring for my animals while I was in the hospital. It’s hard to express the value from those who helped fence, till, plant and weed (especially weed!) my vegetable garden.

Words matter (I knew this, but new context!)

Being asked “How are you” with that sad sound like you’re greeting a grieving widow may lead to a depressing recitation of medical shit. A breezy “how are you” could yield the same, or just “fine” or “still alive.” My default is a literal interpretation and my top of mind, whether I act like it or not, is that I’m not sure how I am.

Piha Beach, west coast of New Zealand. Photo: Meg Turville-Heitz

“What have you been up to” might garner a litany of medical appointments. I’d rather think about other things. Are you writing? How’s your garden? Did you see the story about xyz? Diversions discourage wallowing. I want to laugh. I want to look forward to things.

And it matters. Early on I developed an infection from an IV infusion, on top of other chemo-related side effects that left me near rock bottom. As I waited after hours for a lab result that might lead to an emergency admit, I let the maudlin feedback loop run (I read all those NIH studies on life expectancy and hoo-boy sometimes TMI is your own fault). A nurse told me to ignore the studies. They included everyone, but not everyone was me. She said those who maintained positive attitudes and made plans and found things to look forward to tended to be the survivors. I have to believe that. And I’m putting it into practice.

Isolation

It helps, but I’ve learned plans need to be realistic and flexible. The treatment calendar is in charge and side effects are everything. Like how chemo weakened connective tissue and thus abetted a sprain that wouldn’t heal. And that weakened ankle led to a fall resulting in a broken rib. And then there was that whole fractured leg thing … all three injuries were side effects of the chemo not allowing my body to keep me healthy.

I wasn’t prepared for the sheer isolation cancer treatment can create. I’m an unabashed extrovert. I’ve always been the person who said, yes, let’s do it! But now, if you invite me to a concert, a wedding, a movie, a tavern, a lunch, to go for a hike, etc. I’m going to do calendar work in my head first, and while I add it on the calendar, I know that in most cases I’m going to bail.

Learning a new way to measure time

Week one after a chemo treatment I’m too nauseous, dizzy, and oogie to do much of anything. The first four days are right out. My stomach is upset. I feel bloated. My bowels aren’t happy. Chemo brain sets in: for me a low grade headache, words and names disappear, and thinking is just hard. Social settings feel too loud and confusing. Everything tastes like hot vinyl. I have cotton mouth. I just want to be in sweats as I stir MiraLax into my Ensure and eat sodium crackers while noticing that everything I want to do occurs during my first week of treatment.

The author waiting for the toxic materials to arrive. Photo: Meg Turville-Heitz

The second week of treatment the immune system crash happens. Mouth sores make spicy/acidic foods a no-no and a rash starts to show up (sweats FTW). The hot vinyl taste is abating and I’m ready for some good food, but because my immunity sucks I need to avoid fresh fruit and veggies, cold cuts, and other foods that could potentially harbor bacteria that could land me in the hospital. I’m not even supposed to change the cat litter (yay!), except I have to live with the stench, and the stink eye the cats give me.

Week three, let’s do something! My immunity is coming back up, but, crap, my blood refuses to carry enough oxygen. I’m the person who has been flinging 50-pound bags of animal feed around daily for decades, but suddenly I’m winded walking to the car. I go upstairs to change clothes to go out, stopping at the top to catch my breath and feel older than I’ve ever felt. I come down and my chemo brain realizes I left my cell upstairs. Back up I go, realize I didn’t put on jewelry. Back down I go. Oh, the cell is still upstairs, and I forgot socks. Back up I go. Socks on. Back down. Nope, left the cell upstairs. Back up … do I really want to go out? I was just going to run some errands. Maybe tomorrow. Rinse, repeat. All week.

Week 4 I’m kind of feeling okay. I make myself walk two miles. It takes me twice as long because I have to stop at the top of each small rise for breath. I need walking poles for support. I feel my body starting to tense as the week progresses. It’s almost PTSD-like anticipating the full day of appointments capped by a four-hour infusion of material clearly labeled “hazardous waste.” Labs will tell me whether or not the cancer is still there. Or maybe, like last time, several hours in they’ll postpone the infusion to wait a week for my blood levels to recover, so I can anticipate it all over again next week.

The vulnerability

All these things add up to lost certainty, a sense of age and decrepitude and mortality, compounded by that lack of human engagement, it just builds toward sadness or depression that comes with recognizing one’s own vulnerability. It doesn’t help if you tend to be an extremely independent type. Hating to ask for help only feeds into that.

I wasn’t prepared for how the drugged brain could also leave me terrified. I have a non-stop inner dialogue that just won’t shut up. It’s where my creativity lives. It’s where these words are coming from. But some drugs shut off that voice. To go from nonstop brain engagement to … nothing … is petrifying. I couldn’t imagine. I was functional. I could do work tasks, like responding to emails or collecting and dispensing information, but the creative part: poof. I felt bereft. The positive attitude thing went silent. I couldn’t feel expression. I didn’t feel a smile. I didn’t feel a laugh.

My go-to thing to lift my spirits or cool anxiety is usually a hike or a walk somewhere in nature. But that door is shut during most of my treatment cycle. I’m left a little unsteady on my feet, a little less certain of everything I’m doing, and for an extremely independent person, that is something new, and hard, and makes it so much easier to stay home.

Reflect on positivity

Of course, chemo isn’t forever. It just feels like it. My first go was three rounds of chemo, a six week break while I had half my organs (probably an exaggeration) removed, then another three rounds of chemo and an attempt at an immunotherapy to which I had a paradoxical reaction (go figure), which meant no more of that. This was followed by two weeks of radiation for the parts the surgeon couldn’t reach.

Then nine months on tenterhooks thinking do I dare hope I’ve whipped this bitch? Am I clear? Can I start planning for a future? What do I want to do now? How long do I have? When … boom that little blood test starts to tick up again. Now it’s six more rounds of chemo. And in the first three treatments, I’ve had two severe paradoxical reactions to two standard drugs, adding to the uncertainty. A reoccurrence is scary in a different way. I know what it did to me the first time and that I didn’t fully recover from it. My hair had just started to grow back (my eyebrows are slackers) and why am I worried about hair when I should be worried about whether I’ll survive! … I didn’t even mention the impact going bald can have on your social life. This time, so far, it’s just thinning a bit. I really don’t want another hairless winter.

So, a little more information than I expected to learn and since I’m such a sponge for new knowledge I’m sure there’s more to come. But let’s be positive. I have things yet to do.

Interested in hearing when there’s a new blog post, or when a book becomes available? Sign up for periodic news updates.

The author captured at Karekare Beach, west coast of New Zealand.